Blog Archive: Week of 8 September 2024
14 September 2024. One would think a long-lived disease such as this would progress slowly and gradually. No. As I learned, both from direct experience as well as from my nurse, that it advances in stages. Which explains why I've felt reasonably okay for some weeks, then suddenly just a few days ago felt as though I'd been run over by train. Like someone snipped out a chunk of a movie, and now our hero is inexplicably in dire straights. It is, as the nurse put it, a new plateau. I am forced to wonder how many more of these I have remaining before I reach the end of the line? As I said to the nurse, I can endure a fair amount, except for mental decline, and that is beginning to set in. The nurse assured me that I have options. They will help me reach the end at a time of my choosing. That alone is a tremendous comfort.
13 September 2024. I feel especially thankful that I have hobbies. I simply cannot imagine enduring this process without some kind of distraction to help stay sane. What would one otherwise do? Just lie in bed suffer? It is maddening enough as it is even with things to do. Indeed, I feel extra lucky that I have multiple hobbies, because it's quite impossible to remain focused on one activity for more than a few minutes, and so I find myself spending the day alternating between activities. And even then, I find it all too easy to slip into a mental twilight zone where my thoughts dissolve into a slurry of nonsense. Even writing this is a serious challenge. A few words at a time, separated by periods of staring at the screen, listening to random words and phrases echo around me, as if I was trapped in a thought tornado. Okay, time for my morning meds. They do help me stay grounded in the here and now.
12 September 2024. I can feel it in my bones: a slow, unsteady progression from bad to worse. It's not unbearable, not yet, but I fear it may be soon, perhaps a bit sooner than I've come to believe. It's worst in the morning, when I awake; an uncomfortable sensation that my body doesn't want to wake up.
11 September 2024. Yesterday I was asked if I'd be watching the debate. Debate? I honestly had no clue what he was talking about. For the past several months, I have totally divorced myself from news outlets, social media platforms, and any sources of public discussion. And I refuse to change that position. When it comes to the current political climate, a) it does nothing but raise my blood pressure, which is not at all good for my health, and b) there is absolutely nothing I can do about the situation by discussing it with anyone. I was honestly hopeful I'd be dead before the coming election, but since that may not be the case, then I will simply stick my head back in the sand and leave it there until I finally do expire. Whatever transpires is well outside my realm of influence or, more particularly, my range of interest. So, if you would please, refrain from forwarding jokes, memes, updates, gripes, or even passing references to any of this nonsense, and I will be a very grateful—and indeed somewhat healthier—man for it. Thank you.
10 September 2024. Yesterday I felt pretty good, all things considered. Today, not so much. Difficulty breathing, lightheadedness, and muddled thoughts. It's the old not too bad days/bad days syndrome, and today is starting out as a bad one. It is what it is, as they say. If things don't even out, well, then they don't, and I have to consider how I'll move forward.
9 September 2024. Sometimes, on very rare occasion, when I'm quietly sitting still, I can almost—almost—feel "normal." It doesn't last long, and it doesn't take much to break out of that sensation, but I do find it quite amazing that it's even possible to feel that way at all. Especially considering how I felt just before I started hospice care. I was a complete wreck. Wheelchair bound. Paranoid and nearly irrational. In tremendous physical and emotional pain. I was practically on bended knee begging for someone to help pull the plug. Now, to be clear, hospice care is doing nothing to address my disease. Nothing to lower my blood pressure, or regulate my heartbeat, or anything that might improve my vitals. All they do is provide comfort. If this hurts, hit it with pain meds. If something is freaking me out, give me a tranquilizer. If I'm having trouble sleeping, whack me with a sleep aid. Just give me whatever I need to feel good, and however much of it does the trick. My former cardiologist would be having fits: I should be on these new meds, since they can slow the disease, and those new meds, since they can help regulate things or whatever. But not only are the meds all really expensive, they don't actually make me feel any better, and indeed often make me feel worse, since they replace any "feel good" meds. (Ask me how I know all of this.) Oh! Oh! But I might get addicted to some of those "feel good" meds! So what? At this point, what's the worst possible thing that could happen to me? It sure isn't getting addicted to something that improves the quality of my life, for the short amount of it I have left. Bottom line: I'm a quality over quantity person. Six weeks of feeling pretty good sure beats six months of feeling like a failed science experiment.
8 September 2024. Somehow, I know not how, but by some unknown means—and for some unknown reason—I continue to function. And although life is undeniably strange and vaguely unpleasant, it's not unbearable by any means. Not yet, at any rate. I am still wondering: what's going to happen next?